JoinMyList Logo small
Website Update - Jan. 2012


Don't miss the recently updated Hope for HH website including HH Headlines and our new featured family -  Jo Jo Canariato

Members of Hope for HH's Board of Directors & Medical Advisory Board attended the American Epilepsy Society annual meeting in Baltimore, MD Dec. 2-6.  



For conference highlights, new research articles and more - visit the website. More to follow in 2012.

Remembering Grace 12/24/03-12/11/11 

The entire HH community extends its deepest sympathies to the Webster Family. This is a terrible loss for Erica, Perry, Sarah, Garrett - and their extended HH family & community. 
Erica is the HEART of Hope for HH and she and her family are in our prayers.


Got Feedback?
If you have any questions or comments, please email . See something you like - let us know that too! 

Happy New Year!
Hope for Hypothalamic Hamartoma
Board of Directors 




Provide information and support to HH patients, caregivers, and healthcare providers and to promote research toward early detection, improved treatments, living with HH, and cure.



Board of Directors


Lisa Soeby, President


Ilene Miller, VP & Treasurer

Erica Webster, Secretary

Emma Kane


Medical Advisory Board


Jack Kerrigan, MD, Chairman
BNI at Phoenix Children's 
Phoenix, AZ, USA

Alexis Arzimanoglou, MD
University Hospitals of Lyon
Lyon, France

J. Helen Cross, MD
UCL Institute of Child Health
London, England

Simon Harvey, MD
Royal Children's Hospital
Melbourne, Australia

Maya Lodish, MD
National Institutes of Health
Bethesda, MD, USA

Jean Régis, MD
Timone University Hospital 
Marseille, France 

Harold Rekate, MD
Chiari Institute
Great Neck, NY, USA

Volunteer Opps


We are currently looking for an experienced database manager.  Just a few hours a month will go a long way. To learn more, please contact:


Save The Date


2/4 Join Hope for HH for the Epilepsy Therapy Project Family Day. (San Francisco, CA)


3/31 Walk for Hope for HH (Washington, DC) 


11/30 American Epilepsy Society Meeting (San Diego, CA)


for more info visit


Hope For 
Hypothamalic Hamartomas

P. O. Box 721

Waddell, Arizona 85355


Find us on Facebook